How bad do doctors get. I was diagnosed in June 2018, with an AVM and Aneurysm in the left partial lobe. Having been told it was inoperable, they are now discussing possible treatments, which is great. With my symptoms becoming worse, it is a massive relief. After talking to the neuro team at John Radcliffe about the worsening headaches, was told, if they get much worse, to go straight to A&E. Having been woken in the night with severe headaches, phoned 111 who said they would get a doctor to call me back. With the headache so severe, I got my son to take me to A&E. When I got there and told them about the severe headaches I was having, I got strange looks as if to say, you came here with a headache. After seeing a triage nurse, have the usual BP, Temp etc. Got to see a doctor, showed them a letter from JR detailing my symptoms. Only to be asked what I wanted them to do for me. Trying to explain the danger of severe headaches and what it meant in my condition, seemed to just add to there confusion. It was suggested I take a stronger pain killers. Eventually my wife suggested they might do a CT scan, to which they reluctantly agreed. I was told the scan looks the same as the last one, but needs to be double checked and they will let me know. I now have to Phone the Neurosurgeons secretary, to find out if I should do anything further.
And yes I was straight in the phone this morning, voicing my opinionâŚ
Does anyone else have these sorts of problems�?
I have found a couple things with the medical system here in Canada, similar in many ways to the UK. Specialties act in silos. I needed to coordinate everything through primary care, an example is everybody wanted blood work. I coordinated through primary care to go once and get what everybody needed. Go to lab once, and occupy less time of an already crazy busy system. Easy right? More difficult than it should be, I think the inefficiencies in the systems are massive. I think it is a by product of way too much for many of these folks to do. It is that self perpetuating process, too busy to break down the silos to perhaps improve efficiencies. Not sure if that makes any sense? I do know that you need an advocate, whether for yourself or someone on your behalf. Iâm lucky, I can advocate for myself and have a wife who is a nurse so can let me know what I need to do! The frustration is one constant for sure. Take Care, John.
Mick,
Can I start by saying âwell doneâ for cracking and just going to get checked out. I think it is perfectly right, when youâve got something that bothers you significantly, to go and get it checked.
On the other hand, Iâve had a similar situation in A&E. The impression I came away from my abortive visit to A&E was that the only point at which A&E are interested is the point at which youâve got some life-threatening deficits going on / are already lying on the floor. Honestly, A&E are not interested until you are acute.
A severe / sudden / not responding to paracetamol headache would definitely propel me to A&E if I were in your situation.
I went to A&E twice: once because we were not getting answers as to treatment plan (and both me and the GP were getting fed up with no real response). It was at that point I learned of A&Eâs role as definitely acute care provider. I was âstill walking and talking, so what the hell was I doing in A&E?â was basically the feedback. And itâs true, I didnât need to be there.
The second time was when I had a lump in my angiogram wound that was busy throbbing to the beat of my heart. It had been there for a few days, I think, felt quite hard and Iâd been checking everything was feeling like the previous time, and it wasnât, so I went to A&E with a concern about an aneurysm and they were happy to check me out. I think I was seen in what was effectively out of hours doctor service rather than A&E but it was worth getting checked out and the doctor was comfortable that I had done so.
So⌠I think if you have the same situation, Iâd do the same as you did. Severe headache = turn up at A&E. If everything is OK and you donât degenerate into something worse, then be happy about being sent home. But if it turns into something nasty, youâre in the right place.
I think the trick may be persuading them to treat you as a neurology patient rather than a person with a headache. I got used to introducing myself everywhere as âIâve got an arteriovenous malformation of the brain and Iâve suddenly got x happeningâŚâ Definitely the best way to get an on-the-day GP appointment, I know that!
Hope my rambling helps a bit.
Very best wishes always,
Richard
Hey Mickeboy,
Does anyone else have these sorts of problems�? YES!!!
Iâm in Australia and have very much similar issues. Post surgery I went to my pcp with a severe headache and other âweirdâ sensations ie tingles, balance issues etc. His opinion: âThey operated, they fixed.â I returned home, 6hrs later with no relief and my wife took me to the ER. Their opinion: âYouâve seen you pcp, nothing we can do, go homeâ so I did. When I eventually got an appointment with the neurosurgeon for a follow up he was very annoyed with me for not following up directly with him, as it turns out there was an issue, a major issue, which required surgical intervention. The problem was to get an appointment with the neuro specialist I needed a referral from my pcp whose opinion was: âThey operated, they fixed.â I was in a perpetual lose/lose situation.
I think a big part of the problem is the name âheadacheâ and the attitude of âWell, we all get headachesâ but often these are not just headaches, these are mind numbing explosions of agony. Trying to quantify these to a headache is impossible and IMO if you have never had a âmind numbing explosions of agonyâ comprehending it is impossible. Most medicos have never been in such pain, they think we are exaggerating or (my favourite) ââŚyou just have a low tolerance to painâŚâ Grrrrr
I have âheadpainâ every day ranging from bad to very bad to OMG. When it gets to the point of OMG and my normal management tools donât work I go to hospital. But when I get there I donât say I have a headache, I tell them I have an excruciating migraine. It gives my âheadpainâ some sort of emphasis. ie EXTREME
I must agree with DickD, advocacy is a must. I used to be an advocate for my former clients and often medicos are willing to accept information from an advocate. But when Iâm in pain my self advocacy can come across short tempered âI want it right, and I want it right F$#@ing NOW!!â. Where my wife can say the same thing (minus the âFâsâ) and get a bit more action. But as I say if my management tools donât work or fail I too go to hospital and as DickD states 'âŚif it turns into something nasty, youâre in the right place."
Merl from the Moderator Support Team.
Sometimes itâs something nasty and youâre âin the right placeâ and still nothing happens. I always introduce myself to the ER staff as an AVM brain surgery survivor then drop the name of my neurosurgeon. He has a lot of pull. I live in a small community with a small hospital, not much more than a first aid station really, so I had my two surgeries at a major hospital in Vancouver BC. Post surgery I was sent back to finish my recovery in my local hospital and on discharge it was impressed on me at every level âif anything at all doesnât feel right get straight to the ER and theyâll take care of you.â Encouraging words but not reality. Between my 1st and 2nd surgeries I attended the ER at least 10 times with related issues. The last time before my latest surgery, I was taken in by ambulance; they sat me in front of a TV with cartoons screaming even tho my headache was brutal. I was left there for a hour before anyone brought me in despite it being a âquietâ night.
The ER doctorâs final words to me were âitâs a mysteryâŚI donât know whatâs wrong with you. Thereâs no point coming back, we canât do any more for youâ. My GP contacted my neurosurgeon direct asking for direction and within a week I was back in surgery in Vancouver. I needed a stent placed to get rid of all the blood pooling at the base of my skull from the old AVM feeder veins. Iâve found you have to have a big voice and not be intimidated by callous ER staff. Iâm sure there are some good ones but they never seem to be working when Iâm there! Perhaps being a small hospital they just donât have experience with this kind of stuff. My husband is my biggest advocate, speaking when I canât. I owe him my life and I canât thank him enough.
Thanks guys for the replies, it has helped more than you know. I had a really bad episode last night, my wife was going to phone an ambulance as she was really scared. After the other night I was worried about going. I have spoken to the Neurosurgeon, who is very upset at the hospital response and hearing from you guys, I will go to A&E whenever I feel the need and introduce myself in a different manner.
Thanks guys prayers for all
Mick
I have been going around and around with the neuro people here about what to do about my headaches (old subject, same pain, moving on). So while I canât directly relate to what you all are saying personally, when my Dad had pancreatic cancer, we had 10 visits to the ER in 15 months and I can see the same thing happening here in the StatesâŚ
That does bring to mind two situations where I was able to get in and get medical attention almost immediately. If you show up with a 5th grade boy who is sobbing because he was working in Grandpaâs work shop and almost cut the tip of his thumb completely off and itâs wrapped in towels and the towels are turning red from blood, then you get seen fast.
The other time was actually me, when we were first discovering that the left hypoglossal nerve was getting impacted by the AVM and I was losing all sensation in the left side of my tongue, face etc., that got me in there really quickly. They ruled out stroke and then things moved at a more ânormalâ pace.
Hang in there and while hardly anyone can know what your headaches are like, I bet most of us can. I can.
TJ
Hey there! Let me say thank you for your persistence in the ER! 2nd, I can say that at least in my experience, smaller community hospitals often do not have exposure to AVM bleeds or symptoms. I say that as I was misdiagnosed in my local hospital, but then transferred 3 hours later to a larger hospital where they confirmed I had an AVM bleed. So what happened in the 3/4 hours in between? I am not mad, but how many lives could have been made dramatically for the better if the triage team noted AVM bleed? Press on in your case! Youâre here, so get the word out for the rest! Blessings!
Youâre absolutely right. Our local ER has a sign up in the admitting area that says âif you are bleeding or experiencing chest pain make yourself known to ER staff immediatelyâ. Says it all.
I was first diagnosed in 1978. It was 2009 before the doctors said, âwe know what it is - but we donât have a #@%#@ clue what to do - go to Mayo.â In 2017, the doctors in West Michigan said, we donât know what to do, but we have a guy downtown. He knows what to do. He did, he saved me from a potential brain bleed, but I got left with collateral damageâŚ
If they donât know, be persistent, tell them they need to find out or they need to find someone somewhere who does. This guy in Michigan (me) went to Mayo (3 times) and the University of California at SanDiego once because we kept pushing.
To quote the shortest commencement speech in the history of the world, âNever, never, never, never give up.â Winston Churchill after WWII.
TJ
Hi mickeboy,
I definitely hear what you are saying about a&e and agree with what Richard said, unless you are acute they are not too concerned. I suffered a bleed but because I was still walking and talking I wasnât taken to seriously, it did change once the ct scan confirmed a large bleed and I couldnât fault what they did for me but getting to the diagnoses was a pain. If you get a stiff neck at all defo get to a&e a sure sign of bleed along with the headache.
Thanks again every time I feel low you guys help me along. I can not put into words how grateful I am for all the support I get on here.
Prayers to all
Mick
How bad do doctors get? well, I had one doctor tell me all the pain was in my head (ie. mental). I would love to go back and show him where it was (AVM in my left rear).
When I was finally diagnosed and treated, the Dr. used metal coils (ineffective). Now, not only did the coils not work, but I can no longer just get an MRI (locally) to see if I need further treatment, but I have to have a full CT Angiogram out of state.
I wish you the best and hope you heal quickly.
I have 12 coils in my AVM siteâŚthey are made of titanium and are not affected by MRIs, airport xray machines and the like. My neurosurgeon told me nothing but titanium has been used for the last 10-15 years. They worked like a charm.
Yes oh yes. Unfortunately this sounds all too familiar to me. General hospitals haveabsolutely no idea about the sort of conditions members in this site have and are ignorant about their symptoms, severity and treatments. It doesnât help that many are dealing with increased populations (as the area they cover has been expanded) and lack of resources - both staff and money. Brexit hasnât helped but thatâs another story. I am also treated at John Radcliffe as my nearest neuro hospital (1 hour 30 mins drive from where I live)⌠Until recently never had any complaint about treatment there. Compared to the general they were a dream cojme true. Unfortunately JR now also seems to be suffering from expansion of the area it covers. My consultants are very good and caring. But trying to get an appointment, clarification of arrangements or through on the phone is a nightmare.
As I understand them, They are not affected by MRI, but they creat blind spots in MRIs
I have 11 clips from 1978 that are still in there. I have 30 coils from my January 2018 âmess.â
The last time I needed a CT (after January of 2018), I warned the tech, âYou are going to see some really strange things when you take the pictures.â But at least for now, Iâm okay. She came back and said, âOh my goodness, Tom, I am so glad you told me. I would have been on the phone to your doctor and getting an ambulance here to get you to the hospital!â
Nothing to see here foks, just move along⌠
When I had my first MRI post op, the radiographer didnât have a report on whether clips or coils had been used, what they were made of nor anything like that, so they wouldnât MRI me until they had a detailed report, including batch numbers and everything, so there is clearly some caution required once youâve had metal of any kind left in your head.
Obviously, you donât want to be sticking to the inside of the MRI machine like a Tom And Jerry cartoon where one of them has swallowed the smoothing iron, do you?
Once they had my report, they were happy to magnetize me as many times as they fancy. But then I think my additives are pure glue, no clips or coils.
Before I had my first post op MRI, my neurosurgeon had to provide a report with description, brand and serial number of my coils before the MRI tech could/would proceed. Needless to say, his career would have suffered greatly had I been stuck to the inside of the machine! I asked my neurosurgeon if I could see the resulting images and he showed me. Naively and not knowing any better, I imagined the âcoilsâ to be little curly spiralsâŚthey showed up on the image looking more like steel wool compacted into the vein. They showed up very clearly, no shadows or âblind spotsâ. I have since had several more MRIs, all of equal clarity. Maybe Iâve been lucky?
That is good. My coils cause about a 2 inch blind spot on the mri where my AVM is⌠so the doc canât see my AVM with an MRI. I am glad you donât have the same issue.